This Is MS Multiple Sclerosis Knowledge & Support Community

Centenarian,

I am not convinced about the randomised trials regime in Europe or America.
The system as a whole and the practice is flawed, in several ways.
There is a good article in the Lancet from a year or so ago arguing the entire clinical trails regime need scrutiny.
I could try to find it for you if you want.

I would agree with you that diet is just one factor, and that diet sells books.
But please note that only a very tiny part of the protocol on pg 41 is diet related.
http://www.thisisms.com/forum/general-d ... 15188.html

Where I am not sure either is that we need better studies, bigger randomised trials, more funding, etc.
I come from that side as well, not medical, but from the top level down in an other domain.
But the system is locked, judicial steps will take long time.
I think it needs action at the micro level, just patients who try a protocol supported by a good multidisciplinary medical team (with little risk).

Leo

Dr. Ebers research has shown that relapses are unrelated to long term outcome, and current DMD research is based on reducing relapses. Real decline comes through atrophy of grey matter. So whatever type of MS one has, attention should focus on nourishing the brain and CNS in general. Dr. Wahls also stimulates blood circulation which helps get the nutrients (including oxygen) into the brain. Individuals differ as to optimal nutrition as well as blood/cerebrospinal fluid circulation, but no one can go wrong seeing that their grey matter is nourished.
Vesta
MS Cure Enigmas.net

PS I myself believe PPMS is caused by poor cerebrospinal fluid flow and blood flow owing to skeletal obstruction (bones, muscles etc.) and needs to be treated by a body manipulator like a chiropractor using a cox table. Check out upright doc on the CCSVI CCVBP thread for example Nov 8, 2014 3:11 am

Blossom,

An upright and Cine MRI would clearly show obstruction to venous blood and CSF flow. Considering the size of the spur it has to be blocking blood flow through the vertebral veins in the epidural space. As I have said many time, according to neurosurgeon Dr. Wise Young, an expert on traumatic cord injuries, venous hypertension in the vertebral veins is one of the most overlookded causes of chronic ischemia (decreased arterial flow) and subsequent degeneration of the cord. I suspect that the spurs are also affecting CSF flow in the subarachnoid space due to faulty hydraulics. The faulty craniospinal hydrodynamics (hydraulics) are affecting the long motor tracts of the cord which are across from the spur and faulty flow.

Have the neurologist consult with Dr. Raymond Damadian to get his opinion on the possible role of spondylosis and stenosis in faulty craniospinal hydrodynamics.
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Best regards, Vesta

When I was still relapsing/remitting I went on a paleo diet. This was long before the author of the book published recently on it had ever heard of it.

My rule of thumb was: if you couldn't have gotten ahold of it 10,000 years ago, don't eat it. Simple. Nothing more complex is likely to work.

I think it had a very positive effect on me. Impossible to tell now what would have happened had I stayed on it. I was on it for over a year. One thing I remember was, it lifted the veil on what "food" really is. For instance, I saw ice cream as nothing but a ball of fat and sugar. Takes the fun out of some things.

It's very difficult when most so-called foods are designed to create craving, and make somebody money. Almost impossible when society expects you to eat a diet consisting of almost no real food.

All I can say is: try it. You won't regret it.

Diet is just one part of Terry Wahls' therapy.
The other part, probably more significant, was Neuro Muscular Electric Stimulation.

NMES is a succesful therapy for post herpetic neuralgia (paper of Maria Nagel refers).
I think MS is as much a connection problem in the periphery than in the CNS.

See also the tread New concept and treatmetn options for MS.

"Yourarethecure" hit the nail on the head:

Its hard to say what helps and doesn't help MS. Because they can not prove ANYTHING. But that is also the exact reason we have to do everything possible that could and should help.

With regard to Dr. Wahls's, the diet she recommends is just one part of a her complete protocol.

Jelinek's program also deals with the concept of doing "everything possible".

Feeling good when you have MS for most requires hard work. But doing everything possible has its rewards, and is the only option until a cure is found. And that is the beauty of the programs Dr. Wahls and Jelinek and others present. Motivated individuals who "do everything possible" in general seem to do better than those who don't.

It is refreshing to read the varying experiences/philosophies of fellow ms travellers.

I am somewhat disillusioned with the results of my adhering to a specific diet. I notice a deterioration in my general condition since following the Jelinek and then Wahls diets. The comeback from many adherents will be that I am not following it completely enough or that I am missing out a core concept that renders the protocol inoperative.
I do not for one instant believe that diet needs be an essentially complex affair. I use some relatives as an example: they are farmers and in their late 60's, they eat (and have eaten for many many years) a simple meal of meat and 3 veg for lunch and supper every day of the week and they are both extremely healthy. Their lifestyle is diametrically opposed to mine and has been for years and years. I always looked down on them as somewhat simple and twee but they are obviously streets ahead of me in many areas; health being one. There are 1 and a half billion people in India who eat much simpler than us in the West and the results are telling. Now that there is a growing middle class that wants the same foods and lifestyle as the West has, India now has a growing population of people suffering from a variety of auto-immune diseases of which MS is one. I do not think that this is a coincidence. Cutting out all processed foods and as much oil as possible, while limiting the intake of sugar and dairy and increasing intake of fruit and veg can only be good for you!

Fighting this disease is a multi-fold affair - diet, supplements, exercise, medication and ATTITUDE. I truly believe that with the correct positive attitude you WILL beat this thing.

heya have you had any labs done by chance? and if so, what are your numbers like iima?

vesta wrote:Dr. Ebers research has shown that relapses are unrelated to long term outcome, and current DMD research is based on reducing relapses. Real decline comes through atrophy of grey matter.

I agree that relapses and T2 lesions correlate poorly with long term disability.

Do you understand that this conclusion was made by using a scientific methodology...by actually following people over time and recording data...by questioning hypotheses...by questioning what people assumed to be true.

Making things up and hoping they are true and not doing appropriate studies is the exact opposite of Dr. Ebers' approach.

vesta wrote:PS I myself believe PPMS is caused by poor cerebrospinal fluid flow and blood flow owing to skeletal obstruction (bones, muscles etc.) and needs to be treated by a body manipulator like a chiropractor using a cox table. Check out upright doc on the CCSVI CCVBP thread for example Nov 8, 2014 3:11 am

Ok...can you provide evidence for your claim? For instance, has chiropractic manipulation been shown to improve CSF flow or improve patient outcome versus sham control?

To anyone who is convinced by this sort of rhetoric, I have a bridge to sell you in San Francisco

-C

centenarian100 wrote:

vesta wrote:Dr. Ebers research has shown that relapses are unrelated to long term outcome, and current DMD research is based on reducing relapses. Real decline comes through atrophy of grey matter.

I agree that relapses and T2 lesions correlate poorly with long term disability.

Do you understand that this conclusion was made by using a scientific methodology...by actually following people over time and recording data...by questioning hypotheses...by questioning what people assumed to be true.

Making things up and hoping they are true and not doing appropriate studies is the exact opposite of Dr. Ebers' approach.

Of course I know how this conclusion was reached. That's why I posted this. His conclusions haven't stopped drug companies from pushing their products based on so called science which in fact doesn't support their claims. I'm not selling anything. Yes, I do "believe" most PPMS cases are due to skeletal obstructions to blood/cerebrospinal fluid flow. Consider Robni, Dania and Blossom as examples. I would certainly try to check that out before getting angioplasty. No one has to listen to me so do please stop being so sarcastic.

bump

jimmylegs wrote:heya have you had any labs done by chance? and if so, what are your numbers like iima?

TonyNZ wrote:It is refreshing to read the varying experiences/philosophies of fellow ms travellers.

I am somewhat disillusioned with the results of my adhering to a specific diet. I notice a deterioration in my general condition since following the Jelinek and then Wahls diets. The comeback from many adherents will be that I am not following it completely enough or that I am missing out a core concept that renders the protocol inoperative.
I do not for one instant believe that diet needs be an essentially complex affair. I use some relatives as an example: they are farmers and in their late 60's, they eat (and have eaten for many many years) a simple meal of meat and 3 veg for lunch and supper every day of the week and they are both extremely healthy. Their lifestyle is diametrically opposed to mine and has been for years and years. I always looked down on them as somewhat simple and twee but they are obviously streets ahead of me in many areas; health being one. There are 1 and a half billion people in India who eat much simpler than us in the West and the results are telling. Now that there is a growing middle class that wants the same foods and lifestyle as the West has, India now has a growing population of people suffering from a variety of auto-immune diseases of which MS is one. I do not think that this is a coincidence. Cutting out all processed foods and as much oil as possible, while limiting the intake of sugar and dairy and increasing intake of fruit and veg can only be good for you!

Fighting this disease is a multi-fold affair - diet, supplements, exercise, medication and ATTITUDE. I truly believe that with the correct positive attitude you WILL beat this thing.

The family of herpes viruses lies at the basis of many auto-immune diseases including MS.
The virus re-emerges because our immune system weakens.
see the first and last page of http://www.thisisms.com/forum/general-d ... 15188.html

Diet is clearly one aspect.
>90% of our immune system is located in our gut.
A poor diet will weaken the immune system with catastrophic consequences.

The other day, I was talking to my parents; they are close to 90 years old and in generally good health; they were farmers for their whole life.
We talked about diet and MS.
They said what they had told me before several times: that current generation people are not quite as healthy as their generation or previous generations.

Besides food, we started to talk about hygiene.
They said that farmers in their early days used to wash themselves once per week, their arms and legs.
And these people became very old, and never went sick.

We take a shower every day, sometimes twice per day.
Our immune system is not trained as it used to be 100 years ago.
Likewise the middle class men in India: perhaps their food has not changed significantly, but their hygiene has.

I can only agree to what Terry Wahls writes in her book:
It should be noted that the increase in life longevity is not the result of a change in nutrition, but despite it.
New medical techniques, drugs, and technology, among other factors, are responsible for the development of an older population.
The people themselves get ever weaker.

Perhaps to nutrition, we should now add hygiene as a factor why we get ever weaker.

I think its interesting that all of these "MS Diets" restrict or eliminate red meat, and most protein foods in favour of a plant based diet. You need high stomach acid to digest protein and grains. The link below scratches the surface of why these diets might be somewhat effective for MS...

http://www.scientificamerican.com/artic ... osis-begin -in-the-gut/

There is definitely a connection with the gut in my mind. Apparently 60% of pwMS have low stomach acid. 80% of people with Rheumatoid Arthritis have low acid. And many other "auto-immune" disorders have this issue as well.

Low stomach acid is called Hypochlorhydria and the symptoms can include:

Malnutrition ( one study found the majority of pwMS are skinnier than controls)
a. amino acid deficiencies due to poor digestion and assimilation of protein. Low grade amino acid deficiencies can be associated with muscle wasting, immuno-deficiency, nervous system dysfunction and reduce liver detoxification.

b. multiple mineral deficiencies particularly of calcium, iron, magnesium and possibly selenium, chromium, manganese, copper and other trace minerals.
Deficiencies of these minerals can further cause ill health and increased risk to degenerative diseases.

c. vitamin B12 deficiency. This is particularly seen in achlorhydric patients where there is no production of intrinsic factor. This is a chemical compound produced by the stomach which tags onto vitamin B12 released from protein in the stomach and carries it down the intestine to allow B12 to be absorbed in the lower part of the small intestine.

Food Intolerances (allergies is a suspect in MS)
When protein is poorly digested, partially digested fragments can gain access to the body and initiate an activation of the immune system causing conditions associated with food intolerance, e.g. arthritis, rhinitis, asthma, eczema, urticaria (hives) and colitis.

Colon Toxicity (a toxic environment could kill the beneficial bacteria that FMT replaces)
An increased lead of undigested protein fragments can get to the colon and feed a section of the flora there which overgrow, produce poisonous substances (like ammonia and various biogenic aminos) which are toxic to the body if allowed access to the general circulation. This is called putrefaction of the bowel.

I started testing my stomach acid with Betaine HCl with Pepsin, a very cheap supplement. I find that if I take a pill when I eat oatmeal and a whey protein shake (easy digestion and high bio-availability) I notice a heavy burning feeling in my stomach, suggesting my stomach acid is high enough. When I eat a meal with chicken or turkey I can take 3 or more pills with no stomach ache. Also interesting fact is that Betaine HCl is proven to lower the levels of Homocysteine implicated in Alzheimer's and other neurological disorders.

Kronk's link to the Scientific American article, "Could Multiple Sclerosis Begin in the Gut?" is

http://www.scientificamerican.com/artic ... n-the-gut/

I like reading this thread as I eat my 6 ounces of salmon and a protein shake !